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Living with IH in Australia Survey

One of the things Hypersomnolence Australia does is advocate for people with Idiopathic Hypersomnia (IH). This is done in various ways including via submissions and attendance at hearings for inquires. There have been two since 2018. The Sleep Health Inquiry and the current Inquiry into approval processes for new drugs and novel medical technologies in Australia. There has also been the MBS Review and now I am working on a submission for the Review of the National Medicines Policy. I also meet with the Australasian Sleep Association and other stakeholders where I also have an opportunity to raise issues that relate to living with IH in Australia. To enable me to represent people living with IH in Australia to the best of my ability I need to have a good understanding of the range of issues people with IH in Australia face. To help me do this we have created a survey. The survey is designed to find out what living with IH is like in Australia. We want to know people's experiences including the challenges they face. The information this survey collects will help us with our advocacy, education and awareness initiatives. Therefore the more information we have the better we will be able to assist our community.

The survey is completely anonymous. You can answer freely. We have no way of knowing who you are. That said, Hypersomnolence Australia is committed to ensuring your privacy at all times. We have a privacy policy addressing issues related to the use, collection, security and access of personal information that can be viewed on our website. If you have been diagnosed with IH and live in Australia please take a moment to fill in our survey. If you have been diagnosed with narcolepsy please see further below.

If you are a parent or carer of a minor with IH please fill in the survey on their behalf. If you are a medical or allied health care professional and have patients or clients with IH please share this survey with them.

If you have any questions or would like to provide more information please feel free to email me at Edit: 25 November 2021 We have also created a Living with narcolepsy survey. The purpose of this survey is the same as our Living with IH survey. We will be sharing the data collected with Narcolepsy Australia so that they can use it in their advocacy and awareness initiatives too. If you have been diagnosed with narcolepsy, please complete this survey. Michelle Chadwick Hypersomnolence Australia Founder and Executive Director


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